At a crossroads.. Advice needed and an ear to listen..

[PhilC]

Hi Tom,
@tbird2340 wrote:

I’m *hoping* this is the herx that I’ve always “wanted” but never had.

I believe that’s exactly what it is.

@tbird2340 wrote:

I take about (10-12) 200mg Ibuprofen each night.. Doesn’t do much, if anything with the pain.

That’s a very large dose of ibuprofen. The “proper” way to take that much ibuprofen would be to take three or four 200 mg tablets three times a day, preferably with meals. Of course, that is a prescription dose and contrary to the directions written on the bottle. Ideally, if you’re taking that much ibuprofen you should discuss it with your doctor — he may write you a prescription for it or, better yet, an NSAID that is more “gut friendly,” like Celebrex or Relafen.

@tbird2340 wrote:

The crossroads is.. Do I go to a rheumy and quit all this?

I think quitting now would be a big mistake. You just started a new protocol, one that appears to be working.

@tbird2340 wrote:

Is this a herx? Is that a good thing?

Yes and yes (in my opinion). However, it is not a good thing if it causes you to abandon the treatment, or if it causes you intolerable pain. I believe that the doses of the antibiotics you are taking are probably too high, and it may be necessary to temporarily reduce the doses you are taking. I recommend contacting your doctor to discuss this. Give him an update on your situation. It would also be a good time to ask for a prescription for an NSAID like Celebrex or Relafen.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[A Friend]

@PhilC wrote:

Hi Tom,
@tbird2340 wrote:

I’m *hoping* this is the herx that I’ve always “wanted” but never had.

I believe that’s exactly what it is.

@tbird2340 wrote:

I take about (10-12) 200mg Ibuprofen each night.. Doesn’t do much, if anything with the pain.

That’s a very large dose of ibuprofen. The “proper” way to take that much ibuprofen would be to take three or four 200 mg tablets three times a day, preferably with meals. Of course, that is a prescription dose and contrary to the directions written on the bottle. Ideally, if you’re taking that much ibuprofen you should discuss it with your doctor — he may write you a prescription for it or, better yet, an NSAID that is more “gut friendly,” like Celebrex or Relafen.

[…… text skipped at this point]
@tbird2340 wrote:

The crossroads is.. Do I go to a rheumy and quit all this?

I think quitting now would be a big mistake. You just started a new protocol, one that appears to be working.

@tbird2340 wrote:

Is this a herx? Is that a good thing?

Yes and yes (in my opinion). However, it is not a good thing if it causes you to abandon the treatment, or if it causes you intolerable pain. I believe that the doses of the antibiotics you are taking are probably too high, and it may be necessary to temporarily reduce the doses you are taking. I recommend contacting your doctor to discuss this. Give him an update on your situation. It would also be a good time to ask for a prescription for an NSAID like Celebrex or Relafen.

Phil

TBird and Phil,
What do you think about TBird and his “willing physician” calling Dr. S in Ida Grove to give the willing physican and TBird some guidance/suggestions. I feel sure he would glad to help.
AF

[tbird2340]

Thanks for the reply Phil.. Makes me feel better..

AF, does Dr S just treat with AP or?? I think my doc went to a Lyme conference recently and that’s why he’s giving me what i’m on now (at least that’s what my wife said.. :)).. So is Dr S for lyme as well?

We called him (our doc) yesterday.. He said that it sounded like I am having a herx which is a good thing, but he said if I am miserable he doesn’t want it to be too much too fast, so he said to not take the azithromycin and to wait to take doxy until I feel better then start back slowly..

He also said to take hydrocortisone to help support my adrenals..

[A Friend]

@tbird2340 wrote:

Thanks for the reply Phil.. Makes me feel better..

AF, does Dr S just treat with AP or?? I think my doc went to a Lyme conference recently and that’s why he’s giving me what i’m on now (at least that’s what my wife said.. :)).. So is Dr S for lyme as well?

We called him (our doc) yesterday.. He said that it sounded like I am having a herx which is a good thing, but he said if I am miserable he doesn’t want it to be too much too fast, so he said to not take the azithromycin and to wait to take doxy until I feel better then start back slowly..

He also said to take hydrocortisone to help support my adrenals..

TBird,
Guess I was “asleep at the wheel” and did not realize your treatment was specifically toward lyme. Do you have a history of any wisdom teeth extractions, root canaled teeth, mercury amalgam fillings, overlays of some kinds, etc. that may be keeping you ill?

I’m not trained in any health professional field, but have read incessantly since 1990 trying to figure out my own sudden onset chronic and lingering illnesses that seemed to begin with a chronically sore jaw, diagnosed as TMJ, and later I became very ill about every 4 months for two years and then ventured into Dr. William Crook’s world (he was a pediatric allergist, who researched his babies illnesses and found treating yeast/fungal overgrowth helped them greatly to get better). Since that time, my own path has gone through many episodes (peaks and valleys) of varying kinds. Just the last year or two, a new “happening” pointed me in the direction of learning that the origin of my chronic illness definitely had much (if not most) to do with dental cavitations that developed where four wisdom teeth were extracted and did not heal correctly because a ligament was left in each of these that should have been removed — about any of this I had no knowledge until Spring of 2014 when I made an appointment with a very knowledgeable holistic dentist. When this kind of infection happens, there are organisms that have found a home in these cavitations, because they were not able to heal properly.

Now, the assignment I need to give myself is to read/learn whether or not lyme disease actually “can” be similar to the path of my own illness with these unusual organisms (when the cavitation surgery was done, I had the option of sending specimens from each cavitation for DNA analysis to see what they were). I didn’t want to miss the opportunity to know what they were; so, I had this done.

Am wondering, does anyone studying the lyme side of our chronic illnesses have any light to shed on these kinds of dental findings that are associated with many serious diagnoses… including Parkinson’s, ALS, MS, and numerous others I won’t try to recall and name here. But, the plot certainly has thickened the past couple of years for me when my pcp talked me into taking high-dose Vitamin D-3… and all hades broke loose!

AF

[Maz]

@tbird2340 wrote:

AF, does Dr S just treat with AP or?? I think my doc went to a Lyme conference recently and that’s why he’s giving me what i’m on now (at least that’s what my wife said.. :)).. So is Dr S for lyme as well?

Tom, I know you asked AF this question, so hope you don’t mind me responding. Unfortunately, Dr. S. doesn’t treat Lyme (meaning borreliosis and all the other potential tick-borne coinfections). The treatment he prescribes is pretty much the Brown way. Nothing wrong in that – it’s just very different to how LLMDs are treating.

We called him (our doc) yesterday.. He said that it sounded like I am having a herx which is a good thing, but he said if I am miserable he doesn’t want it to be too much too fast, so he said to not take the azithromycin and to wait to take doxy until I feel better then start back slowly..

Yes, this sounds much more sensible, Tom, especially as you’d been off abx for so long. My guess is that you started out way too high on the combo and it needs a more measured approach…similar to the CAP protocols, where they go slow with one and then add in the second and (if needed, a third is also added, usually flagyl or tinidazole).

He also said to take hydrocortisone to help support my adrenals..

Others here have used hydrocortisone and there isn’t a lot of difference between this and prednisone, except it’s thought to be more bio-identical and requires different dosing (e.g. 1mg pred = 4 mg hydrocortisone). If you want to know if your adrenals are struggling (true adrenal insufficiency), then it’s worth getting saliva testing run to check for how they’re doing, as there are supplements that support adrenal health, too.

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682206.html

It’s kind of ironic when a doc says to take cortisone or “hydrocortisone “to support” the adrenals, because when these drugs are used for any length of time, the adrenals atrophy and cease producing their own natural form of cortisone, called “cortisol.” This is why these drugs need to be weaned slowly. It’s important to read up on this drug, because there are drug interactions that you might want to be aware of, especially as if taking it alongside anything else that is blood-thinning, like aspirin:

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682206.html

All this said, Brown did use 5 to 10mg prednisone for short spates of time to help folks through the worst of herxing…just not for the longer term due to the above. 😉

http://doublecheckmd.com/EffectsDetail.do?sid=12177&eid=1732

“Pseudorheumatism or glucocorticoid-withdrawal syndrome not related to adrenal insufficiency has occurred on withdrawal of corticosteroids. Patients experienced anorexia, nausea, vomiting, lethargy, headache, fever, arthralgias, myalgias, and postural hypotension. Symptoms resolved when corticosteroid therapy was reinstated.”

[Maz]

@A Friend wrote:

Am wondering, does anyone studying the lyme side of our chronic illnesses have any light to shed on these kinds of dental findings that are associated with many serious diagnoses… including Parkinson’s, ALS, MS, and numerous others I won’t try to recall and name here. But, the plot certainly has thickened the past couple of years for me when my pcp talked me into taking high-dose Vitamin D-3… and all hades broke loose!

Hi AF,

Short answer is yes. Longer answer: I had two experienced LLMDs tell me that spirochetal bugs like to hang out together in biofilm colonies as they confer survival strategies upon one another (protection in numbers) and they love the “juicy” brain (and similar other) tissues, as it’s the perfect food.

http://www.lyme-help.com/LDAdverseConditions.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3171359/

Did you see the Otzi, “Iceman,” research article? When doing genomic testing on his tissues (he had bad arthritis in his knees), they discovered he had the Lyme bug in his knees and the oral spirochete, “trepenoma denticola” in his hip bone.

http://www.ibtimes.co.uk/otzi-iceman-non-human-dna-found-hip-bone-5300-year-old-mummy-1456863

http://www.huffingtonpost.com/2012/02/28/otzi-the-icemans-genome-reveals_n_1307532.html

The fact that this dude had both infections does not mean anything…lots of people have both…but the theory of LLMDs is that Lyme is so immunosuppressive that it enables other infections to become opportunistic. This was born out in research by UC DAvis researchers, whereby they showed the Lyme hijacks the lymphatic system and is thus able to elude detection (one reason why it’s so hard for some people to test positive).

http://news.ucdavis.edu/search/news_detail.lasso?id=9922

Lots of research out there by fellas, like Dr. Alan McDonald on spirochetes and neurodegenerative illnesses. E.g. in research he did on Alzheimer brains (autopsy slides), he found spirochetes in 7 out of 10 had Lyme! 😯

Worth watching Under Our Skin, if you have an interest as this researcher talks about this in the film:

http://www.hulu.com/watch/268761

[Anonymous]

Hi Tom,

Try adding fish oil. I take Krill oil and helps a lot with inflammation.
Margie

[tbird2340]

So I didn’t take any Doxy (or the other one) this past Saturday and Sunday (per usual).. My pain seemed to subside and go back to “normal”..

I proceeded with the normal dosage this week, so far (2) on Monday and (2) on Wednesday.. Well I’m guessing that is bringing the herx back because my one shoulder is the most pain I’ve ever felt in it (usually doesn’t give me problems)..

You know that bone that short sticks out up on your shoulder? Well on my left side that bone is a little bigger than on the right and it is oh SOOO tender.. Possible herx symptom?? (I hope)..

[A Friend]

@Maz wrote:

@A Friend wrote:

Am wondering, does anyone studying the lyme side of our chronic illnesses have any light to shed on these kinds of dental findings that are associated with many serious diagnoses… including Parkinson’s, ALS, MS, and numerous others I won’t try to recall and name here. But, the plot certainly has thickened the past couple of years for me when my pcp talked me into taking high-dose Vitamin D-3… and all hades broke loose!

Hi AF,

Short answer is yes. Longer answer: I had two experienced LLMDs tell me that spirochetal bugs like to hang out together in biofilm colonies as they confer survival strategies upon one another (protection in numbers) and they love the “juicy” brain (and similar other) tissues, as it’s the perfect food.

http://www.lyme-help.com/LDAdverseConditions.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3171359/

Did you see the Otzi, “Iceman,” research article? When doing genomic testing on his tissues (he had bad arthritis in his knees), they discovered he had the Lyme bug in his knees and the oral spirochete, “trepenoma denticola” in his hip bone.

http://www.ibtimes.co.uk/otzi-iceman-non-human-dna-found-hip-bone-5300-year-old-mummy-1456863

http://www.huffingtonpost.com/2012/02/28/otzi-the-icemans-genome-reveals_n_1307532.html

The fact that this dude had both infections does not mean anything…lots of people have both…but the theory of LLMDs is that Lyme is so immunosuppressive that it enables other infections to become opportunistic. This was born out in research by UC DAvis researchers, whereby they showed the Lyme hijacks the lymphatic system and is thus able to elude detection (one reason why it’s so hard for some people to test positive).

http://news.ucdavis.edu/search/news_detail.lasso?id=9922

Lots of research out there by fellas, like Dr. Alan McDonald on spirochetes and neurodegenerative illnesses. E.g. in research he did on Alzheimer brains (autopsy slides), he found spirochetes in 7 out of 10 had Lyme! 😯

Worth watching Under Our Skin, if you have an interest as this researcher talks about this in the film:

http://www.hulu.com/watch/268761

Maz, All,
Lots of “food for thought” above in your post — which I’ll probably have to defer studying more until after Christmas.
I had just finished reading in some of my “saved” documents about the various populations of organisms in our body, especially when we have chronic illnesses, when I read your above post.

Many (if not most of us) have become aware of the health benefits related to coconut oil (even for Alzheimer’s; and dental benefits when used as a dental toothpaste formula made with it). I didn’t want to miss this opportunity to paste a couple of links with excerpts about coconut oil here, not only because of its health benefits, but because of its power to address many organisms (and hopefully help reduce their population!!!! I found a refrigerated liquid Coconut Milk flavored with Hazlenut, a liquid creamer, at my health store. The creamer stays fresh for ages. For breakfast, I prefer black coffee; but for a between meal treat (almost daily), I like a cup of coffee with this creamer, a tablespoon of coconut oil, and a tad of Kal brand (of course) stevia added. There are few things I find that I can regularly enjoy that are actually this good for me!!!

Maz, thanks again for all the information you’ve shared above. I look forward to learning more from it.

AF

PS Hopefully these links and topics will be helpful for many of the unfriendly organisms mentioned in your post above.

http://kessingersblog.blogspot.com/2010/10/coconut-oil-truth-about-saturated-fats.html
FRIDAY, OCTOBER 22, 2010
Coconut Oil – The Truth About Saturated Fats by Dr. Mercola
[Excerpt from above link:]
Monolaurin is a monoglyceride which can actually destroy lipid coated viruses such as:
HIV, herpes
Measles
Influenza virus
Various pathogenic bacteria
Protozoa such as giardia lamblia.

Lauric acid is a powerful virus and gram-negative bacteria destroyer, and coconut oil contains the most lauric acid of any substance on earth!

Capric acid, another coconut fatty acid present in smaller amounts, has also been added to the list of coconut’s antimicrobial components.

This is one of the key reasons you should consider consuming coconut oil, because there aren’t many sources of monolaurin in our diet. But the health benefits of coconut oil don’t stop there.

The Benefits of Medium-Chain Fatty Acids
Coconut oil is about 2/3 medium-chain fatty acids (MCFAs), also called medium-chain triglycerides or MCTs. These types of fatty acids produce a whole host of health benefits.
Coconut oil is nature’s richest source of these healthy MCFAs.

---

http://articles.mercola.com/sites/articles/archive/2011/07/02/cherie-calbom-on-juicing-part-1.aspx
Excerpt about juicing from above Mercola link

[Anonymous]

Tbird,

Your story rings so familiar to me. I want you to know I was in the same situation as you- I have two young children and 3 years ago I started experiencing pain in my feet. I didn’t think much of it because I was a runner and just thought it had something to do with my shoes. Well the pain spread to my knees and then my shoulder. I went to my doctor and he ran test after test- they all came back negative. Two weeks later the pain was getting worse- my doctor recommended I go to a rheumy and was able to get me an appt the next day. Well they ran some tests and I was diagnosed with RA. I refused to believe it. I got online and read and read (thats how I found Road Back). I made appts with 2 other rheumys for a second and third opinion- still RA. I gave up dairy, I went gluten free, I did everything I could do so I didn’t have to take “the big drugs”. I found an alternative doc that was not versed in AP but did recommend some supplements and Low Dose Naltrexone- he also recommended a doctor in NC that was familiar with AP. During this time things got progressively worse. My knees were so swollen it was tuff to walk- I could not sleep b/c my shoulders screamed if I laid on my side. I was miserable- my kids were 4 and 6 and I could not throw a ball, could not wrestle with them and certainly could not run around with them. I was at the lowest point in my life. My wife is and was great but I knew she didn’t understand what I was going thru.
Fast forward January 2013- I started AP with the doctor that was familiar with the protocol. I also kept seeing the rheumy. I was upfront with her on everything the other doctor and I were doing (though I was amazed that she had never heard of the protocol or Dr.Brown). After a few months I did not notice much difference from the AP infact things got worse- I could not bend my elbows fully and my arms were always aching. I finally gave into trying Embrel but I continued my AP. My alternative AP doctor approved this and thought the Embrel could actually help the mino work better. I slowly started to feel better and better but it took well over a year. Some say it was the Embrel but I should have gotten its full effect within 6 months.
Fast forward to now- Iam feel 100 times better than I did a year ago and at that time I feel 100xs better then the year before. I just finished coaching my son’s Little League team this summer and his travel team this fall. I can throw a football and baseball again, I can pick up my daughter and swing her around. I am still on AP, 100mg 2x MWF and I am weaning off of the Embrel. To me it came down to quality of life- sure I didn’t want to start Embrel but it helped and I think it helped with the AP also. I helped to educate my rheumy and gave her a copy of Dr.Browns book. Both my doctors have been working together to help me and I respect them for it.
Don’t get hung up on what a doctor might say, your the patient and you need to feel comfortable with them- like I said, I went to 3 rheumys, 2 of them I was not impressed with (they didn’t want to hear from me, they just wanted to put me on drugs). Find a doctor that is going to help you and listen to you, get away from suffering- it is a terrible way to live- I can vouch for that.

Besides the mino, Embrel every other week, some supplements (Vit D3, Muliti, Krill Oil, Vit A) and Alieve every so often, I take nothing. I am no longer gluten and dairy free (though limited) and I have cut out most sugar.

I wish you a pain free New Year (or close to it)!! My prayers are with you.

Keith

[MLTelfer]

My simple opinion. I became interested in Arthritis Trust and then almost immediately saw an article in the Tampa Tribune on 50 worst charities in America and Arthritis Trust was listed. That was enough for me to steer clear. I would go in another direction on that one. Just me.
I think you need immediate medical attention. I would not dabble in anything. Don’t feel embarrassed or worry about what the doctor will say. For WHATEVER reason, your immune system is attacking your joints, even if your joints are collateral damage to mycoplasma. I would go to the internet and research local rheumatologists and find one that has good bedside manners and is appreciated by patients. From there I would branch out to more holistic treatments and antibiotics.
On a personal note, that is what I am doing with my son. Time for science right now. After I get him back under control I will go back to Dr F. and reintroduce abx and strategize from there.
Gloves have to be off and fight with everything in the arsenal, even the big guns sometimes.

[Suzanne]

@NotfondofRA wrote:

I am still on AP, 100mg 2x MWF and I am weaning off of the Embrel. To me it came down to quality of life- sure I didn’t want to start Embrel but it helped and I think it helped with the AP also.

I’m never sure what to make of posts about Embrel. I’m glad it works so well for you.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[tbird2340]

@Suzanne wrote:

@NotfondofRA wrote:

I am still on AP, 100mg 2x MWF and I am weaning off of the Embrel. To me it came down to quality of life- sure I didn’t want to start Embrel but it helped and I think it helped with the AP also.

I’m never sure what to make of posts about Embrel. I’m glad it works so well for you.

What do you mean by this?

Thanks

Also, thanks for the replies guys.

[A Friend]

@MLTelfer wrote:

My simple opinion. I became interested in Arthritis Trust and then almost immediately saw an article in the Tampa Tribune on 50 worst charities in America and Arthritis Trust was listed. That was enough for me to steer clear. I would go in another direction on that one. Just me.
I think you need immediate medical attention. I would not dabble in anything. Don’t feel embarrassed or worry about what the doctor will say. For WHATEVER reason, your immune system is attacking your joints, even if your joints are collateral damage to mycoplasma. I would go to the internet and research local rheumatologists and find one that has good bedside manners and is appreciated by patients. From there I would branch out to more holistic treatments and antibiotics.
On a personal note, that is what I am doing with my son. Time for science right now. After I get him back under control I will go back to Dr F. and reintroduce abx and strategize from there.
Gloves have to be off and fight with everything in the arsenal, even the big guns sometimes.

EDIT: ML, after my reply below was posted, and I was reading it, I clicked on the link to Arthritis Trust I’d given you down below in my reply. It opened, and I looked over the list of topics. In one of them I found it addressed some specifics about apparent attacks against them, such as you mentioned. I’ve read enough of such remarks over the years in various places, trying to disparage “things and institutions and physicians that have results,” to recognize them… and spare myself reading them. However, it can be an education if any have not read such as this, to read through the explanations: http://arthritistrust.org/donations/better-business-bureau/
thought others might be interested in some sources of the criticisms on which you based your original comments and doubts about Arthritis Trust.
AF[/color]

ML Telfer,

Hello, hope your son will continue making progress, and you will continue to search for answers. After reading your above post, and what you gave as your “simple opinion” about ArthritisTrust.org, we all form opinions about various things we encounter or read — but these may not be what they seem.

My own experience and knowledge about this site (and reading outstanding articles, information & history provided by their many associates involved in this organization over the years) calls me to suggest you might visit the site and take a longer, second look at them and their humanity-driven services and research for those who suffer, especially the outstanding medical and scientific backgrounds of so many members and former members who have contributed so much, and about many who have passed on.

A really big breakthrough in my own medical history happened after I had been chronically ill for a long time, had entered a period of a wasting syndrome (didn’t know that was what it was), and started using EFA’s in the form of Flaxseed Oil in my own concoction of yogurt, fruit, & flaxseed oil. [At the time I added the EFAs, I knew nothing else about their use, nor had I been to ArthritisTrust.org.] Eating the concoction twice daily trying to stop weight loss and hopefully regain lost weight, over a period of a year I began looking like the picture of health. Later it was accidentally found I had suspicious x-rays that looked like metastatic carcinoma, but months of testing found no source of the presumed cancer.

I began thinking that the only thing I had been doing different that turned the problem around involved the EFA’s (essential fatty acids). By then, I had a lot of trust in ArthritisTrust.org articles/information, so went to the web site and did a search for Essential Fatty Acids, and the article “Essential Fatty Acids Are Essential” showed up. It was truly an ahaa moment when I began reading this article about the work of outstanding German scientist Dr. Johanna Budwig who cured many terminal cases of cancer when all else had failed. It was truly an ahaa moment. That was what turned my own wasting around.

We all may have our definition of what we think of as good charities. The lives and dedication of the medical giants who share their work and are members of http://www.arthritistrust.org have given me gifts for which I could not estimate a value for. But knowing the caliber of their character and their treasure chest of information may shine a new light on this organization for you.

Also, beware of recommendations and criticisms made by such as Quackbusters and such, as they are trying to get rid of physicians and other medical professionals with real answers that don’t always have RX numbers after them.

ML Telfer, sounds like you are dedicated to helping your child. So glad you are here, and sharing your journey. We’ll all be cheering you and your child on! Hopefully, you will keep an open mind about ArthritisTrust, and may benefit from visiting the site and looking through the list of Article titles.

Best to you,
AF

[Suzanne]

@tbird2340 wrote:

@Suzanne wrote:

@NotfondofRA wrote:

I am still on AP, 100mg 2x MWF and I am weaning off of the Embrel. To me it came down to quality of life- sure I didn’t want to start Embrel but it helped and I think it helped with the AP also.

I’m never sure what to make of posts about Embrel. I’m glad it works so well for you.

What do you mean by this?

Thanks

Also, thanks for the replies guys.

There is an RA drug called Enbrel. When people post about their results on “Embrel”, I don’t know how to take their report. I can understand confusion about a name when you are considering a med, but once the rx is filled and you are injecting yourself with it and writing about your experience for others……I don’t know how to take it.

I suppose I take them for their word, and they are doing well on Embrel. I have plenty of posts from others about their experiences on Enbrel to choose from.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Author]

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